Emily will go for her first PFT on Oct. 9th, three weeks shy of her first birthday. I know this is a pretty run-of-the mill thing and will be at least an annual occurance from here on in, but I'm pretty nervous about it. I'm not sure why I'm so worked up about it, but I'm already losing sleep thinking about it. We got the fact sheet and watched the video to explain what will happen, so I'm clear on that, but I just hate the thought of putting her through it, and I suppose I'm worried about the outcome, too. For those of you who have been through it, how bad was it? Any advice to help me and Em get through it? If not, just some "I survived" messages would help!
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Infant PFT
- Thread starter izemmom
- Start date
M
melleemac
Guest
I didnt even know that they did PFTs on children that young. I was told by my kids CF Drs that they were not done until the kids were 6 or 7 years old. My boys were 7 when they got their first one.
Mel
Mel
coltsfan715
New member
I have heard it was rare to have young children do PFTs because it is hard to get an accurate reading with young children. I may be wrong on that, but that is what one RT has told me. You have to have a patient that can perform the same thing consistently to get an accurate reading for PFTs.
Overall PFTs are very simple. I know when I was younger they had an animated thing to go with it so it kind of inticed me to do it properly. It was reminiscent of the big bad wolf and the three pigs - but you (or I) were (was) the wolf and you (I) had to blow down the houses.
I would try not to worry much about it. I can understand the stress, and I usually get stressed when I do mine as well. I say not to worry about it too much to you though because at a young age the test may not be completely accurate and may not appropriately indicate your daughter's lung function. The docs may be wanting to test it out and see how she does with it - ya know kind of introduce the idea to her. Good luck with and I hope that all goes well.
Good Luck,
Lindsey
Overall PFTs are very simple. I know when I was younger they had an animated thing to go with it so it kind of inticed me to do it properly. It was reminiscent of the big bad wolf and the three pigs - but you (or I) were (was) the wolf and you (I) had to blow down the houses.
I would try not to worry much about it. I can understand the stress, and I usually get stressed when I do mine as well. I say not to worry about it too much to you though because at a young age the test may not be completely accurate and may not appropriately indicate your daughter's lung function. The docs may be wanting to test it out and see how she does with it - ya know kind of introduce the idea to her. Good luck with and I hope that all goes well.
Good Luck,
Lindsey
My daughter had her first infant pft when she was about 17 months old. The hardest part was when she was waking up from the sedative. She was cranky and wanted to get down but still had too much in her system and couldn't even sit up. Take a stroller that lays back if you have one. You don't want to be carrying him once it's done. He'll be like a limp noodle.
The doctor let us stay in the room while it was being done and explained things along the way. It's actually pretty interesting. Abby failed her first pft miserably and was admitted the following day. The great thing about it was that we didn't even realize that she was sick. She ended up being on iv meds for 4 weeks. Her doctor wanted her to have a pft twice ayear and they were all much better after her clean-out.
Now, she is too old for the infant pft and not old enough for the other one. I can't wait until she is. It's a confirmation that she is healthy.
What cf center to you attend? I'm just curious because other parents are saying that their centers are not doing it.
The doctor let us stay in the room while it was being done and explained things along the way. It's actually pretty interesting. Abby failed her first pft miserably and was admitted the following day. The great thing about it was that we didn't even realize that she was sick. She ended up being on iv meds for 4 weeks. Her doctor wanted her to have a pft twice ayear and they were all much better after her clean-out.
Now, she is too old for the infant pft and not old enough for the other one. I can't wait until she is. It's a confirmation that she is healthy.
What cf center to you attend? I'm just curious because other parents are saying that their centers are not doing it.
Hi! They are not bad at all! My twins have been getting them every 6 months since they were born! That is how they found pnemonia in one if them! I love getting them done because they always get a cat scan along with them so we are sure their lungs are clear and nothing is in there! The worst part is giving them their sleep meds, after that it goes good cause they are asleep!LOL They put them in this little box and hook them up to a vest w/ o2 on and squeeze them and all of that just to get good in and out breaths and then they get their ct scans done. I have twins so it is an all day thing, but for you it shouldnt be real bad! They do our clinic visit while they are in there too! It is great! You should be just fine!<img src="i/expressions/face-icon-small-happy.gif" border="0">
Jen
Jen
My son did a study at our clinic using the infant pft. He did the infant pft four times. Every six months starting when he was six months old. It really is not that big of a deal. Once they swallow the med then it takes just a little bit of time for them to fall asleep. I stayed with him while he was in the little box. He was in the box I think about 30-45 minutes each time. Just a few puffs of air into his chest.
The best part of it was at the end of the study they said his lungs look like a child without cf. Good news! Don't stress about it, my son went through a lot worse tests when he had enemas from meconium illeus at birth and for kidney reflux tests.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
The best part of it was at the end of the study they said his lungs look like a child without cf. Good news! Don't stress about it, my son went through a lot worse tests when he had enemas from meconium illeus at birth and for kidney reflux tests.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
Hi Tami,
Please don't loose sleep or stress yourself out over this. My daughter had one done and we were alos able to stay and watch.
Its realy no biggy, they sedated her with an oral medicine and waited till she was asleep. They then just put a little oxygen looking mask on her and the mcahine did its work with the CF doc adjusting some knob on the machine.
That's it, nothing. She wasn't even cranky when she awoke, it was like the had the most relaxing sleep ever. She was ready to play, jump and laugh.
The results i wasn't given, because they were only part of a study and it wouldn't of realy meant anything to know them. Not for me anyway.
Although i will ask what they were and let you know.
Imagine having a yearly bronch done and having them fully sedated, Olivia has hers once a year until the age of five. Now thats scary, and somthing i loose sleep over.
Take care and realx!!!<img src="i/expressions/wine.gif" border="0">
Eli (not logged in)
Please don't loose sleep or stress yourself out over this. My daughter had one done and we were alos able to stay and watch.
Its realy no biggy, they sedated her with an oral medicine and waited till she was asleep. They then just put a little oxygen looking mask on her and the mcahine did its work with the CF doc adjusting some knob on the machine.
That's it, nothing. She wasn't even cranky when she awoke, it was like the had the most relaxing sleep ever. She was ready to play, jump and laugh.
The results i wasn't given, because they were only part of a study and it wouldn't of realy meant anything to know them. Not for me anyway.
Although i will ask what they were and let you know.
Imagine having a yearly bronch done and having them fully sedated, Olivia has hers once a year until the age of five. Now thats scary, and somthing i loose sleep over.
Take care and realx!!!<img src="i/expressions/wine.gif" border="0">
Eli (not logged in)
T
tammykrumrey
Guest
Tami,
My daughters had the infant PFT's done, and as everyone else said, they were not a big deal. They fall asleep after taking the medicine (that they drank) and slept through the whole thing. I was in the room with them the entire time.
Please don't get so worked up about it. There is nothing to worry about, and I felt good knowing that they were getting a baseline on them, even though most CF babies have really good PFT's. It was just nice for reassurance.
My daughters had the infant PFT's done, and as everyone else said, they were not a big deal. They fall asleep after taking the medicine (that they drank) and slept through the whole thing. I was in the room with them the entire time.
Please don't get so worked up about it. There is nothing to worry about, and I felt good knowing that they were getting a baseline on them, even though most CF babies have really good PFT's. It was just nice for reassurance.
coltsfan715
New member
Okay wow ... I was thinking that the PFTs they do for youngsters and adults were the same. I do not recall ever being sedated for PFTs, so my post is pretty much irrelevant ... sorry for that. I was thinking of the regular PFTs - not infant PFTs. It definitely sounds interesting to me - you all have me intrigued <img src="i/expressions/face-icon-small-smile.gif" border="0">.
Good Luck with the PFTs.
Lindsey
Good Luck with the PFTs.
Lindsey
Haileysmommy
New member
Don't worry. Hailey had one done just after her first b-day and did fine. I do second the stroller thing. I had a sling that I carried her in but a stroller wouild be good too. It went a lot quicker than I thought. I went to the cafeteria to get some food cause I was super hungry. When I came back they were almost done. I was glad we did it though because it explained why her O2 levels were only 93 on a good day. I think the worst part of it was that Hailey didn't like the medicine they knock you out with and kept gagging on it. But that only took like 30 seconds.
Hey guys! Thanks for your words and reassurances. It's good to know that I can cross THAT particular worry off my list! Now, if I can just get her over the double ear infection we found out about today and get her to keep some food down, we'll be in business!
Sherry - I had to laugh at the picture of Abby with the Dora star house. The very same house graced my living room from Chrismas until we moved two months ago!!! Isabelle loved it! The funniest part of your pic is the huge colored in Dora eye. Isabelle did the same thing "Cause Dora's eyes are brown!" Abby is the cutest thing! So is Hailey, Leann! My goodness we all have beautiful babies, don't we????
Thanks again for the reassurances!
Sherry - I had to laugh at the picture of Abby with the Dora star house. The very same house graced my living room from Chrismas until we moved two months ago!!! Isabelle loved it! The funniest part of your pic is the huge colored in Dora eye. Isabelle did the same thing "Cause Dora's eyes are brown!" Abby is the cutest thing! So is Hailey, Leann! My goodness we all have beautiful babies, don't we????
Thanks again for the reassurances!
Hi Tami
My daughter Kait had infant PFT's and the best advice that i can give to you is to make sure that YOU get enough rest the night before. The sedation part for my daughter was always rough because she did not like the taste of the sedative. After waking up she was cranky and wanted to walk and get up but of course could not, we usually had our clinic the same day so it really made for a very long day and i never seemed to be rested up for it. I tend to worry about tests and studies and sometimes just regular clinic appts because of course i want everything to be great. Our doctor is the one who invented the infant PFT box so it was great because he always explains everything to us.
Good Luck and everything will be fine just remember to get rest yourself!
My daughter Kait had infant PFT's and the best advice that i can give to you is to make sure that YOU get enough rest the night before. The sedation part for my daughter was always rough because she did not like the taste of the sedative. After waking up she was cranky and wanted to walk and get up but of course could not, we usually had our clinic the same day so it really made for a very long day and i never seemed to be rested up for it. I tend to worry about tests and studies and sometimes just regular clinic appts because of course i want everything to be great. Our doctor is the one who invented the infant PFT box so it was great because he always explains everything to us.
Good Luck and everything will be fine just remember to get rest yourself!
<a target=_blank class=ftalternatingbarlinklarge href="http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=104&STORY=/www/story/02-09-2000/0001136365&EDATE=
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This is the story on the "adult" infant type PFT's
Kaitsmom<img src="i/expressions/rose.gif" border="0">
">http://www.prnewswire.com/cgi-...000/0001136365&EDATE=
</a>
This is the story on the "adult" infant type PFT's
Kaitsmom<img src="i/expressions/rose.gif" border="0">
My son was the 3rd child in the US to have had the infant PFT done when he was about 9 months old. Like the other posts say, the hardest thing for him was coming out of the sedation phase. They also did have somewhat of a hard time getting him to take the sedative orally, but they eventually managed. The machine they put him in was a bit intimidating to me, but the docs and RTs were really helpful and explained the whole process as they went along. Good luck and don't worry too much. Emily will do just fine, and so will you!
Jodi, mom to Tucker w/cf
Jodi, mom to Tucker w/cf
fourkidsmom
New member
My son never had a PFT test until 5 yrs old.